Thursday, September 4, 2008
This was last night -he was playing with his food!
It has been a while since my last post...I've been waiting on good news to report. Nothing has really changed. His spasms are still present and there hasn't been much fluctuating since we added Keppra on Saturday. I was so hoping to be able to tell everyone that it worked. Unfortunately, we haven't seen much of a change at all. It looks like we will be increasing it tomorrow. The neurologist told me last Friday that we are starting at an extremely low dose, because the fewer risks to reach effectiveness the better. That makes for a long wait, I'm afraid. I really don't know if I have the patience to wait this one out. He seems to be doing well on it (no major side effects to note), but I just want to get it over with! I guess we will wait for one or two more increases, but I'm really starting to lean more towards the Vigabatrin. It works so quickly that I can't see why we shouldn't try it. The neurologist was really opposed to it when I first mentioned it (due to a slight risk of peripheral vision impairment), because she was very optimistic about his current condition and the likelihood of lower risk meds working. As she told me after his EEG, if the Keppra does not work, we will most likely be referred to an epileptologist. I think that validates that we are running out of options. Why not try it? Yes, it will be costly (non-FDA approved, therefore not covered by insurance) and it carries some risks, but those risks aren't nearly as severe as letting the spasms go uncontrolled. That's my thought, anyway.
On a better note, Austin is still progressing well. He's standing ALL THE TIME and balancing longer and longer! He's even able to take tiny steps here and there without falling! I wouldn't call them real steps, but he's able to move his feet a little without completely losing his balance. Everyday, he gets a little better! Still hasn't gotten back to babbling since he quit after the start of ACTH, but he can still be very vocal! I can't wait for him to start that back up. I think he was only consonant babbling for about 2 wks when he quit. I wouldn't even mind da-da-da!!! ;)
Just spoke to our neurologist. She is increasing his Keppra from 2mL/day to 3mL/day. I'm frustrated that she was so eager to end our phone conversation. She said she was calling our pediatrician to check on last weeks labs, so I thought I would be hearing back from her soon after. An hour later, I'm still waiting. As his mother, I would kind of like to know the results myself!!! Ugh...doctors!